November 22, 2006
November 22, 2006 | Updates
No news is good news, right?! Things have been good the last 2 weeks. The flu went through Samuel’s class at school and, well, let’s just say, knock on wood. I’m not going to jinx it by saying he didn’t get it. And his stomach seems to be doing much better on the Pediatric Compleat. There have only been a few times that he’s thrown up. And he only spits up when he’s really wiggly after eating. So that’s all good news. I weighed him today, and he weighs 27.5 lbs. I really want him to weigh 30. Hopefully, soon. If only his little brother Nathan could share some baby fat with Samuel. Then we’d be set for sure!We didn’t make our appointment to have Samuel’s pump reduced again. He has just had a hard time getting over the reduction the last few times. I didn’t feel right about pushing another one on him so quickly. So we will wait until mid December when we go down to have his pump refilled to reduce it again. In the meantime, we will do 2 weeks of hyperbaric treatments starting right after Thanksgiving. That should keep us out of trouble.
Samuel is still having seizures when he wakes up. Sometimes they are worse than others. And sometimes, he doesn’t have them at all. He hates them, though. And so do I. He also has them if he gets startled. I’ve learned pretty quick to tap on the door of his room before I enter or make sure I make a lot of noise coming up the stairs on coming up behind him. Otherwise, it will startle him and cause a quick seizure. I even had to change the ring on my cell phone because I was sick of it making him seize. Crazy, huh?
I’ve seen a few neat improvements in Samuel lately. He’s getting much better with his hands. He can turn the pages on a book if you put his hand underneath the page. It is a definite, purposeful movement to turn the page over. He can also bring his hands to midline if he wishes. He doesn’t have a ton of control there, but he can do it, which is new. His head control is still much better then it was. He is able to catch it and keep it from falling forward. But he’s not so good at catching it if it falls backwards. Hopefully, that will come with time.
The big news…Samuel is FINALLY tolerating standing in his stander! I was looking at his legs a few weeks ago and just feeling like they don’t look “normal”. They seem to be turning in a bit, probably because he’s not bearing weight on them. So I decided I would get him to stand in this stinkin’ stander of his. So I made a plan. I figured when I bring him home from school each day, he already has his shoes and neck brace on. So now, I just leave them on and I take him straight from his car seat into the house and strap him into his stander. Then I turn on his TV show that he always watches at noon and I keep him in the stander for that 1/2 hour while I hook him up to his feeding bag and feed him lunch. Know what happened? He did it! The only stipulation he seems to have is I can’t be in the room with him. As long as I’m out of sight, he’s fine. If he sees me, he starts getting upset because he wants out. So I just stay in the other room and peek around the corner often to make sure he’s OK. And he’s done it every weekday for about 8 days now! Way to go Samuel! He even fell asleep in it one day :). And once I take him out, he’s pooped and falls right to sleep for his afternoon nap. So we’ve got our morning schedule all figured out now and it’s working great!
Well, that’s about it. Everyone else is doing well also. I do look at Nathan every day and realize just how amazing the brain is. He has only been here 5 months and he can sit, hold his head and use his hands, arms, legs and voice better than Samuel can. It’s sometimes hard to watch because I want those things for Samuel, too. I just realize how much we all take it for granted. I can hardly wait for the day Samuel can do those things again!
Keep praying!
Love,
The Jewkes
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